In August of 2004, following a routine vaginal hysterectomy, I was left with the most horrendous chronic pelvic pain. A pain so excruciating, sitting was not an option. I can only describe the pain as that of a foreign body such as crushed glass needling away at my insides. Extremely painful genitalia and rectum was my worst nightmare, and my buttocks, thighs and lower back felt as though I’d suffered a severe whipping or scalding.
To my horror, my gynecologist had no idea what was wrong with me. This was to be the start of a very long and painful search for answers to my problem. Unable to return to work, and unable to do the slightest of household chores, I was passed from doctor to doctor. Numerous tests proved futile, as no one could find an answer to my problem. Destined to a life of anti-depressants and opioid drugs, I set about researching my symptoms. This took me to a few websites, which led me to believe that my condition was known as Pudendal Neuralgia, a condition most doctors are seemingly unaware of.
I was very disheartened to learn I’d have to travel to the USA or France to seek treatment for this intolerable pain as it is a very difficult condition to treat and often proves extremely frustrating for both patient and medical professionals. Most doctors refer their patients to a psychologist or psychiatrist to help deal with the pain.
After numerous doctor visits, I went to see one in West Australia who was the first to listen to what I had to say, and take into consideration my internet generated information about Pudendal Neuralgia (most doctors will not accept information generated from the internet.) From there we learned of a gynecologist in Sydney who was utilizing Botox for pelvic pain. I traveled to Sydney where I had it injected into my pelvic floor muscles, which were in severe spasm. It was the beginning of many visits to Sydney as I had pain relief for up to five weeks at a time following Botox. However, after almost two years of these treatments, it was decided that I would go to France to consult with a gynecologist who specializes in Pudendal Nerve Entrapment. I had information about this doctor from the PN websites.
In June 2007 my husband and I arrived in Aix En Provence in France. I underwent a surgical procedure to release a severely trapped pudendal nerve. This is both a motor and sensory nerve and it controls the function of the bladder and bowel, also supplying feeling to the genitals and rectum. Not only was I in tremendous pain, but I had a slow urine flow, incontinence and chronic constipation. The French team of surgeons have been treating people with this condition from all around the world for a long time, but nothing similar was being done in Australia.
Five weeks later I arrived back home in Perth, Western Australia, very sore and very tired from the long journey. I had been told it could take from 1 – 2 years to recover, but after one year, I was doing extremely well. I’m off most medication, taking only an anti–seizure drug for neuropathic pain at night. No more anti depressants, and thanks to HOPE (Health Organization for Pudendal Education, http://www.pudendalhope.org), I am now able to assist others with information regarding this chronic condition. I am by no means cured, but my pain levels and fitness are a good 70% better. I don’t know if I’ll remain in pain for the rest of my life but the pain that does remain I can cope with. I do my best to get on with life and most days I don’t think about the pain very much. Sitting for long periods of time causes much discomfort so I tend to avoid sitting too much.
The best news is that my doctor has started up a private clinic in Sydney specifically for Pudendal Nerve pathology. The first of its kind in Australia. Through HOPE, I will endeavour to raise awareness of Pudendal Neuralgia, and I look forward to working with the directors to continue the amazing work this organization has done so far. At the time of posting this story I am now three years post op and doing much better. Pain levels are low 2-3/10 most days and NO constipation whatsoever. I don’t regret surgery for once as the three years before surgery I had no change in pain levels which was consistently 8-9/10 and extremely intolerable.